Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: April 2, 2002
BMT-0 or could be + 1 (who knows?)
Robert’s new bone marrow from his donor arrived around 6:00 p.m. last night and then it had to be densified. His doctor did not want to give him the whole volume of the bone marrow because it is very hard on Robert’s lungs to receive a large volume of liquid all at once. After the bone marrow was densified and the red cells stripped out of the blood, there only remained about 110cc. This worked out to be only about 1×10 to the eighth and the original plans were to give him 5×10 to the eighth. They have decided to use the bone marrow they have in storage also. Hopefully after densifying they will still have 1.8×10 to the eighth. They say the stored marrow will have a very distinct smell from the solution they store it in. It may bother Robert because it is supposed to go straight to the tongue once they run it through his line. If we do transplant the old marrow as well as the new, we now hope he will receive as much as last time.
It is now about 4.00 p.m. and Robert has received the stored marrow but we do not know the count yet on what he received. Dr. Horn said they count it afterward. They asked both times if we wanted to keep the bags the blood came in. I thought a picture was a cleaner and less smelly momento to keep long term. I did wonder if Robert would wish we had kept it as a keepsake. My hope is that he won’t be that kind of pack rat.
The defrosted bone marrow does have an awful smell that does upset everyone’s stomach. Fortunately, I had just given Robert a new toy and a new Power Ranger video to watch. He took the bone marrow through his line like a trooper.
Robert’s blood pressure has been running high all day, 140/96 and we have been trying to get it down with nifedipine. Robert has also had lasex, a diuretic; but his blood pressure has remained high. He is also getting amlodopine and this will help lower his blood pressure over time.
Robert’s lungs sound a little wet and his breathing is labored. Even with oxygen blowing on him, he keeps dropping to 88%. I continuously try to get the oxygen as close to his face as possible. He sure has been fighting it. The resident said he should stand up and move around a little but Robert sure was not happy with that idea. He is a good sport but he is stubborn like all the rest of the Starks.
Robert has received platelet transfusions for the last three days each morning.
